from the time I was little I would brag about my badass immune system. I was the healthiest kid ever minus a few kid bouts of strep. When I got sick I knew something wasn’t right.
I’ll take you back to 2002 when I was fifteen and it became imperative that I get “in shape.” Maybe it was peer pressure, boys, or the developing girls, but all I know is I wanted to be able to look good and not breath heavily while walking up a flight of stairs.
I had just bought some new sneakers, this is step 1 for starting a new workout regimen because this is the magic that creates motivation. I put those pups on and got my butt in gear. Now- I will be honest. I definitely ran under 1 mile. I attributed this to the lack of sidewalks and the rolling hills of upstate New York. Hey, it was day 1, day 2 would bring better results. Right? Wrong.
The following morning I woke up in agony. My legs ached, my arms ached, my face ached. I just assumed, man… I am really out of shape. Fortunately, my mother is a nagger, and I mean that with love. She was my biggest advocate and for that I am so lucky because I know not all people have their own nagger. You need someone to look you in the face and say, no, something isn’t right here. And for that, thank you, thank you, thanks to my mother who dragged me to every single doctors appointment.
The road to a diagnosis was not a quick one, but in the scheme of lupus it was- I was diagnosed within 1 year. Within that year came multiple doctors and multiple diagnoses (none of which do I actually have). First I “had” a thyroid condition, then I “had” rheumatoid arthritis, eventually I would be told it was lupus. In order to be diagnosed with lupus you need to fit into a certain checklist because there is not a single distinguishing feature of lupus. The indecisiveness of the diagnosis is probably what makes me a complete idiot with this disease sometimes. I will be truthful with you now and say, I have not always been the best lupus patient. I have forgotten to take my medicine, I have lowered how many pills I take because I don’t think I need them, I have skipped eye exams that I have to go to because the medicine I take has side effects that can damage my vision permanently. Why do I do these moronic things you ask? I don’t entirely know. I often imagined that it is some big mistake and that I don’t have lupus. Well the truth is, I have lupus. I’m beginning to embrace that I do. And I can still live.
I created this blog for a few reasons. One reason is because of the confusion and fear that I faced when going through the initial years of this disease. I felt abnormal, angry, upset, different, I asked “why me” like I was the only person in the whole world with any problems. This was in a pre-facebook pre-blog crazy world, and I felt alone. If I can create hope and an outlet for one person I will be happy. I am finding my way through this disease and as I sit here writing I’m thinking, time to take my medicine.
My rheumie (rheumotologist) and I have a real love hate relationship. He yells at me and I promise to be better. Yesterday I had a followup appointment. He told me I’m doing great. I asked him a ton of questions about running and working out and bikram yoga. He said, “you can do anything. live your life. wear sunblock. seriously, go put on your sunblock.”
52 Miles per Month 
I know just how you feel, in 1989 I had a motorbike accident that let me paralysed for 3 months, I was told I had a slipped disc in my spine, it turned out that I had crushed 5 vertebra and because they put me in traction instead of fixing the problem I was left in severe pain. To five years ago I was told that I had fibromyalgia, never heard of it, so I read up on it and it scared me, the fatigue, the depression, the more meds to take, the wanting to scream leave me alone, don’t touch me it hurts. Recently I have been falling and my legs have stopped moving and I have to concentrate to be able to give my instructions to my legs. I had a visit to my neurologist and after some tests I have blockages in my brain and spinal cord and this has devastated me, I am only young, I am only 50. I have two beautiful granddaughters who live 500 miles away and I can no longer drive it in one day. I have a fight on my hands and you have given me a boost to pick myself up and move forwards. Thank you 🙂
Wow, that’s a lot to take in for any individual. I’m glad you were able to read my words and find some solace. Sometimes I have to read my own words again to remind myself how valuable and precious life really is. Remember how powerful the mind is and that you can’t give up or allow yourself to be weakened by these difficulties. When we tell ourselves we can’t, that’s it, we can’t.
Thank you, most days I accept what is happening to me and take the painkillers, enjoy their hit and then start again. You must get your eyes check please all the time. As I said in another post on your blog I am a photographer and my greatest fear is loosing my sight, I am very visual and I need my sight. So please take the advice from a stranger from Scotland and again Thank you 🙂
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Everything is very open with a really clear explanation of the issues.
It was definitely informative. Your website is useful.
Many thanks for sharing!
I realize that I’m a little late to the party on this post but I just wanted to say it’s really nice to hear someone who understands a little of what i feel. Eventually, I’ll get brave enough to actually write a post about it myself but I tend to be private about my ailments… And I completely hate eye exams!! My doctor gets so irritated and calls and threatens.
Ha! Yes mine does too! I write because I want to find people like you who are like- I KNOW HOW YOU FEEL! Living with lupus I never had people who understood. It’s nice to find a community of people that do. Also, it’s not to be able to write about my accomplishments as well. I felt isolated and defeated because of the disease for so long. Glad you stopped by! Read some others and I’m sure you will find some more relatable material.